Hope 4 SMA
Join our team and help us support Nationwide Children's Hospital!
One of the diseases Nationwide Children's Hospital cares for and does research for is Spinal Muscular Atrophy or SMA. Help me raise money and funds for SMA Research for Dr. Kathrin Meyer's Lab - continuing the great research done at the Research Institute at NCH with teamwork from the Burghes Lab for SMA at The Ohio State University.
On March 21, Madison Reed type 1 SMA 20 years old, recieved the new FDA approved TREATMENT drug (not a cure) for SMA. It is called Spinraza. She was the 4th SMA child dosed and the FIRST type 1 older SMA patient dosed. Within 36 hours of the first injection, Madison showed movement in many areas of her body not able to move in a long time. We are grateful to the SMA Clinic neurologist Dr Al-Zaidy for pushing through insurance to get Madison is drug. Without it her progression of the disease would continue to decline. We are hoping many more SMA children and Adults will not be denied this life saving drug. This is WHY we RUN 4 SMA - why we need to continue to help those with SMA via the clinic and also getting more SMA research to find a cure. NCH is just finishing up with the Gene Therapy Phase 1 trials for infants and will begin more trials as soon as AveXis is cleared for Phase 2 trials.
There is Hope (speranza) for SMA in all these areas above. NCH and the staff in the SMA clinic and the SMA research team are here to help every person with SMA. We as runners and families want to help make sure SMA is not forgotten. SMA is treatments and cure for all.
We are determined to make each step count by fundraising to cure, mend, comfort and save the estimated one million children who will walk through the hospital doors this year. Children from all 50 states and more than 30 countries. Your contribution helps kids everywhere through life-saving research and care.